Wednesday, August 31, 2016

"hope"

Hope.  Another small string of characters that play with my emotions on a daily basis.  I rely so heavily on this word and its definition, yet at the same time, I would prefer not to give its meaning any time or day.  There is a reason I have a love and hate relationship with this word.  It is one of those words that can make you feel elated and excited.  It can give you something to hold onto when there seems to be nothing to grasp.  Then on the flip side, it allows your mind to wander into a dangerous territory, into the unknown, and to give homage to Gene Wilder, "in [to] a world of pure imagination."

Hope is something I prefer to keep in my back pocket because I am more grounded without it.  There are those rare situations where my guard is mysteriously let down and I let hope sneak up on me.  I really dislike when that happens because when the situation unfolds in a manner that wasn't part of my dream of hope, well, it is safe to say it takes some time for things to get back to normal (and yes, definitely ice cream).

I predicted the results of Sonzee's EEG.  She has done enough of them (18 to be exact) for me to qualify myself as an accurate EEG result predictor.  I am by no means saying I could translate the actual EEG itself, but I can give a fairly accurate description of how the reading will be interpreted.
On Monday I shared my predictions, "I am pretty positive the reading will be "typical Sonzee", with her usual spike waves here and there, but nothing too shocking for a child with a CDKL5 mutation.   What I did not really say in my post were the words on the soundtrack that was playing in my head.

I did not share that there was a part of me that hoped and almost believed the reading would be "typical".  I had dreamt in my mind that her epileptologist would write to me and say, "Randi, this is her best EEG ever.  There is no seizure activity and her background is normal".  Along with the monologue in my mind, I envisioned Sonzee sitting, alone, unsupported.  I pictured Sonzee's picture watermarked with not only "sonyasstory", but also as an advertisement of how a medical cannabis product had completely changed her EEG.  Do not get me wrong, the RSHO is helping her cognitive capabilities (we think?), but nothing has performed the miracles I had hoped.


So now, I am sitting here thinking about hope.  Aggravated with the word even more because it is a necessary evil in order for me to travel along this journey, I would not be able to survive without it.  Yet I am so drained from repeatedly having my hopes blow up in front of my face like a latex balloon (if you are unaware of my fear and hatred of latex balloons, consider this the moment where I let you in on my secret).  While I am so incredibly thankful, that Sonzee's hypsarrhythmia is NOT back.  I am definitely saddened and disheartened that her EEG was not what I dreamed it to be...I guess that is just par for this course.


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Monday, August 29, 2016

Realization

It's EEG day.  I am much more relaxed about the possible results since she started Sabril 2 weeks ago.  I honestly do not expect to be told she has hypsarrhythmia, nor would I expect her background to be typical normal.  I am pretty positive the reading will be "typical Sonzee", with her usual spike waves here and there, but nothing too shocking for a child with a CDKL5 mutation.  Yet I am sitting here for the first time in her life wondering why we are even doing this EEG in the first place.

I have known since her diagnosis that seizures were the most challenging component of a CDKL5 mutation.  We have lived in a constant state of fear that they will cause significant brain damage or take her life.  We have treated her spasms (the most dangerous to development at her age) with steroids and now Sabril.  We have chased after complete control with practically every marijuana and hemp based CBD oil, along with straight THC (go ahead you can judge us).  There is always that wonder about what Sonzee would be like if we could control the seizures.  The fog of seizure control completely taking over the simple fact that she will always be missing a complete CDKL5 protein. 

Despite knowing that seizures are just another side effect of her missing protein, I often forget that even if the seizures are controlled, she will not ever be typical.  Even with complete control, she will always have challenges.  Truthfully, with complete seizure control the types of challenges I have seen in other children with the same diagnosis are in my opinion sometimes more challenging.  To the naked eye our kids look typical, but get up close and it is clear they are not like the average child.  

There really is no winning when it comes to the outcome of Sonzee's EEG results.  No matter what, the outcome is still the same.  If her background is typical, she is not going to miraculously be a typical 18 month old when the leads are removed from her head.  If they are typical Sonzee results, well then tomorrow is just like every other day she has had.  If for some reason my mom gut is on a complete vacation and it turns out that she does have hypsarrhythmia, well I am pretty sure Sam and I are not having her endure another round of steroids.  I personally cannot put her through that again myself.


I am coming to terms with the realization that no matter what we do to stop the seizures, there is nothing we can do to change the importance of the CDKL5 protein...and for that, I need to go and buy myself some more ice cream.

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Wednesday, August 24, 2016

New realities

It is a Ben and Jerry's Salted Caramel type of night (mainly because I am out of The Tonight Dough starring Jimmy Fallon).  Really, it is more of an ice cream for all times of day type of week.  There have been way too many firsts in too short of an amount of time for this momma bear to process, and by the time this posts, it will only be Wednesday.  The areas leading me to binge eat frozen yummies both leave me (yes you guessed it) with mixed emotions.

On Monday morning, Sam handed me the mail I missed opening on Friday when Sonzee and I got home from California.  It was an envelope from the DMV addressed to Sonzee herself.  I opened it up and placed between the folded pieces of paper was a blue rear-view mirror hanging handicapped tag.  I ran outside to show Sam before he pulled away, to which he flashed me a quick thumbs-up.  I went back into the house with it and placed it on the counter.  I brought it into the car later on and placed it on the top of the center console.  I did not intend to use it, but it was there for that "just in case" moment.

I am filled with sadness that she qualifies for the placard.  I am filled with relief that on 100+ degree-days she will not have to be subjected to the extreme temperatures by us parking further away from where we need to walk.  I am filled with guilt that she is not in a wheelchair, she is so young, and I have a placard for her.  I know the overall definition of my feelings right now is "denial".  I have been here before.  It is a place where I feel the need to justify all of my feelings and simultaneously talk myself out of every justification.  It will take me some time to come to terms with this new reality.  The reality that Sonzee needs a handicap placard.

On Tuesday afternoon, Sonzee had an appointment with a palliative care doctor.  As I mentioned in a Facebook post, palliative care "is specialized medical care for people with serious illnesses.  It focuses on providing relief from the symptoms and stress of a serious illness.  The goal is to improve quality of life for both the patient and the family."  Dr. Wendy has an amazing reputation and I am so grateful that she has taken Sonzee as a patient.  She will be a liaison between all members of her current team.  She will make our hospitalizations a better experience.  She is developing an ER protocol for us to bring when we go, and I am already at ease thinking about any future visit we will be making to PCH.  She will help us with any life altering decisions that may need to be made.  I am so very excited to have Dr. Wendy on our side and on our team.  Yet again, I am so sad that Sonzee requires the use of a palliative doctor.  The topics discussed during our visit today have never been brought up during well checks with any of my other children.  We did not discuss anything that Sam and I have not talked about on our own, but it was the first time we were asked some of the more not so publicly discussed topics.  It is just another new reality.  The reality that Sonzee, as well as Sam and myself, will benefit from her care.


Overall, I feel my emotions are in balance, in that both the sadness and happiness are being evenly held.  This is just another chapter in Sonya's Story, and we will keep on following where she takes us, I will just make sure there is a fully stocked freezer of Ben and Jerry's.  


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Monday, August 22, 2016

Advice

I have been traveling on a plane with one or more of my kids since my oldest was 3.5 months old.  I can tell you in the little over six years of doing this; I have only experienced two negative encounters.  Both times were due to a crying baby, yet the reasons behind the tears were drastically different.  Regardless, both of these situations resulted in this momma bear in tears as well, and just like my babies, the reasons were drastically different.

On Friday afternoon, Sonzee and I boarded a plane in Burbank, California.  We were flying Southwest airlines and I chose the first open window seat when we got on the plane.  When I travel with more than one child, I tend to go to the furthest available seat, usually the last row so we disturb the fewest amounts of people.  After I collapsed the stroller outside the plane I grabbed my purse, Sonzee's emergency bag, Sonzee's feeding tube backpack, and of course the bear herself.  She was not so pleased with me for removing her from her stroller, so of course she was protesting as we entered the plane, thus the reason behind me grabbing the first available window seat.

There was a woman sitting in the aisle seat and she had her purse on the middle seat, I later learned through conversation that she travels back and forth weekly to Burbank from Phoenix, so the experienced flyer that she was, she marked the middle seat as taken until the doors closed.  Sonzee quieted down shortly after she was in my lap and facing outward.  She is not a baby who prefers to be held, so I took my deep breath and prayed that she would cooperate for the short hour-long flight, and be kind to us all.  We took off shortly after boarding the plane and with some slight readjustments, little bear was asleep, and I was as relaxed as I could be while flying 36,000 feet in the air.

The flight went by quickly, and I was thinking in my head (it was clearly a premature celebration) how Sonzee was going to get at least a high silver or low gold rating on the "star chart" I refer to when flying with the kids.  The pilot made his announcement for our decent, and shortly after I noticed Sonzee's body was doing random jolts.  It was more like a startle reflex, so I just rubbed her head and wishfully willed her back to sleep.  Within 5 minutes Sonzee let out the most horrific screams.  I of course did all I could to get her to calm down (despite what others might suspect because the majority of parents holding a baby in their arms do not enjoy them screaming at the top of their lungs directly into their ears in addition to the fact that they are mortified of the situation).

We (finally) landed and it surely felt like the longest 7-10 minutes of my life.  I honestly could not wait to get off the plane.  As I stood up, gathered all of our belongings, and situated the bear in the best possible position so she might stop screaming, a man a row ahead of us turned to me and said, “You are doing a great job mom”.  I have to admit there was a part of me on the inside that was jumping for joy, while the other part still just wanted to get out of the plane and put Sonzee in her stroller where I knew she would finally calm down.  I ran off the plane, and we were waiting for the stroller, Sonzee of course still screaming as loud as she could.  The pilot clearly reading the distress on my face went down himself to grab it for me.  As I waited, I was bouncing little bear, shushing into her ear, kissing her head, praying she would calm down, and holding back the tears that were filling my eyes. 

That is when it happened.  The tall well-put together businessman with his little black designer rolling bag approaches me.  He walks right up to me as if we are friends, as if I somehow communicated to him that now would be the most perfect time for him to share his thoughts.  He pulls up the bag and stands it up straight.  He looks over at me and he says, “I have two children and I flew with them all the time when they were younger, here’s some advice, it’s her ears, give her a bottle during takeoff and landing.” 

I have to give myself credit, because even though the tears were clearly visible now, I was able to give him a reply that I could only hope would help his future advice giving.  I turned Sonzee so her face would be right in his sight of vision and I said, “Well unfortunately she is intestinal fed and she can’t take a bottle”.  To which he replied, “Oh, sorry, good luck with that”. 

I am unsure which part of his advice hurt me more; was it is the fact that I wish it was that simple, that I could simply give her a bottle and she would calm down?  Maybe it is the fact that possibly it was not her ears that were hurting, but rather those startles might have been mini spasms and that was the reason she was screaming.  Could it be that she was simply having a CDKL5 crying/screaming spell and even if she did take food by mouth, nothing would have helped her?  Maybe, it was because he was so far back on the plane he would not have known if I had even tried to give her a bottle in the first place!


Regardless of his attempt to give what he felt was appropriate advice, I hope what I said to him resonated just a smidge.  Maybe the next time he feels he should be sharing his “I was the best dad ever advice”, he might pay a little more attention to his surroundings and take a second to realize that not every situation is cookie cutter, and what might have worked for him, won’t work for everyone else.  As for the man who told me I was doing a great job, you my friend are one amazing individual!

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Thursday, August 18, 2016

Another school year begins

Today starts another school year over here in Phoenix, Arizona.  The weather still feels like summer, so besides the fact that we have been home only 12 days and it feels like so much longer because the kids and I are ALL so ready to resume our typical routines, it doesn't feel like a new school year should be beginning.  My back to school shopping concluded with literally half a page of yellow highlighter over the items purchased, as it covered three different grades on the left side of the paper.  This morning we will have a first grader and a kindergartner, and on Monday, we will have a preschooler attending three days a week.  I find myself (as usual) with a mixed set of emotions.

Since the summer of 2011 I have always had at least two children who were two and under by my side on a daily basis.  We have always followed a schedule of activities that kept us all busy, me especially.  There has always been special alone time factored in with each child as much as possible.  The other times were days of special bonding for the remaining siblings at home.  This year will be no different on Tuesday and Thursday, but on Monday, Wednesday, and Friday, it will just be the bear and I flying solo.  I am extremely excited to have this time with her, especially since in a year from now the discussion of preschool for her will be brought up, and that gives us a year to start to figure out what our feelings are on that topic.  At the same time, it is slightly sad for me because the types of alone time I will be sharing with Sonzee will be vastly different from the others.

I am finding myself play the "I wonder what it would be like if Sonzee were a typical 18 month old" game.  I know this does absolutely nothing as far as helping me during this lifetime.  Yet, it is a game I tend to play during these types of events.  I honestly can't stop the images and thoughts take over my mind...and to be honest there are definitely days where I get wrapped up in my daydream and I entertain it a minute too long because it brings me such joy.  It is obviously not the same type of joy she brings into my actual life, but it is similar to one of those fantasy dreams that you wake up from and you think about for another 5 minutes or so imagining how it would be if it were your real life.  Sure, our schedule is packed with therapies and activities for us to enjoy together, as well as quiet time to relax, but I will not even lie to myself and say it will be the same.  


I know Sonzee and I are going to have such a great year together on our "Sonzee & Ema days", going on special dates, going shopping, participating in activities, etc.  I also know it is going to be challenging to participate in the above-mentioned activities because going out with Sonzee is not as simple as going out with a typical 18 month old.  I know there are going to be days that will make me feel more sad than I can even anticipate, but I also know there are going to be days that I will feel happier and more thankful for my title of a mom with a child who has special needs...because no matter what, these times we will share will be absolutely special.




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Monday, August 15, 2016

A new direction...

One of the scarier parts of dealing with CDKL5 is making any type of medicinal change.  Even if I can swear up and down a medication isn't working, actually stopping said medication and introducing a new one tends to put me on pins and needles.  We have played this game a handful of times in the past 17 months, and each time I get the same feelings...always doubtful, always excited, always eager and excited, and always, always petrified.

Tomorrow morning Sonzee will start her new medication of Sabril.  I practically begged her neurologist for us to start last week, but we had to wait for the SHARE program to receive all of the paperwork.  I was so thankful that we wouldn't have to wait until her EEG, which is scheduled for the 29th.  This weekend was pretty bad in the land of spasms and seizures for Sonzee.  As much as I was fearing the side effects of the new drug, I am more fearful of the damage that can occur from these types of seizures.  But then, in true Sonzee fashion, as soon as I wrap my head around a new change and feel a tinge of confidence, she has a great 24 hours where the doubt creeps into my mind.

Is this the right choice?  What if we ruin everything for her? What if her vision is effected and there are no therapeutic benefits in terms of her seizures?  What if the keppra while not doing much, was doing something?  I know, I know, I can't and shouldn't play the "what if" card.  I can't play the "question my choices" game either.  I am the first person to say "you can't do that to yourself"...but it always happens.

So tomorrow we embark on a new journey.  One that we will hopefully look back on and say "this was the best move", "I can't believe we were so worried about this", and "Wow! Can you imagine if we decided not to start Sabril".   No matter what, I know that we made the best choice at this time with the information we have, and I am extremely eager to see where this new "pick your adventure" chapter leads us.

Thursday, August 11, 2016

Eighteen Months

My dearest Sonzee Bear, 

I do not even know how to begin this letter to you.  As I sit here the rain is pounding on the skylight, you and your siblings are sleeping, and your father is out at ice hockey.  I have so many emotions running through me right now I do not even know where to begin.  This has been a prominent occurrence during the past 18 months of your life.  I find myself constantly straddling two worlds simultaneously, the one where I am fighting back the tears because of sadness, and the one where I am fighting back the tears because of happiness.  One thing seems for certain, there are always tears.

In one more hour it will be exactly 18 months since I first ignored the signs that you would be making your debut 2 weeks prior to your due date.  A day after the day your father joked that you would be arriving.  In true Sonzee fashion, you had your own agenda planned.  Luckily, for the both of us, you did not make me wait long once you decided it was time.  In just 8 hours, it will be 18 months since I first held you in my arms.  18 months since you made us a family of six, a family of four girls and two boys.  18 months since our lives became part of a storm, similar to the one that is going on outside.  So much has changed since those first moments, yet so much has remained the same.

Since your arrival I have received many new titles; a mom of 4 beautiful children, a NICU mom, a mom of a child with epilepsy, a mom of a child with a CDKL5 mutation, a mom of a special needs child.  I embrace my positions with a smile, but sometimes they mask the pain that I feel for your suffering.  While I am thankful that we are celebrating this momentous occasion with you in our presence, it pains me exponentially that undoubtedly you will have at least one seizure today and you will struggle to communicate your wants and needs.  This day of celebration is clouded with the fact that you will be in pain in some form or another and just like every day for the past 18 months, there is nothing I can do for you to make it go away.

I have been waiting in anticipation for this day as I did with your siblings.  You of course have a specific outfit that was purchased with your personality in mind.  I had distant dreams of the accomplishments you might have achieved, but thankfully, I always keep the backdrop blurry so that you never feel like you have let us down.  I push you like I do your siblings, and while there are days that I am frustrated with the situation, I want you to know that you could never disappoint me.  I am just so thankful for your current capabilities and your consistent determination.  

These last 18 months have been so hard on me for a multitude of reasons, one of them being the constant worry that I am not honoring your wishes.  I just want you to live the life that makes you the most happy.  I sometimes wonder if that is just letting you lay on the green mat so you can roll off it 100 times while you secretly enjoy making me walk over to place you back on it.  You have such a strong fighting warrior spirit, which has become evident; as we have watched, you hover over the fine line of life and death far too many times for my liking.   

While there is no guarantee for anyone, celebrating birthday moments like this is bittersweet to me, as I live in constant fear that it will be the last.  So I apologize now (not really) for the insane amount of pictures and poses I will undoubtedly be making you participate in.  18 months is a date I was uncertain we would even reach with you a couple of months ago and yet it snuck up on me so quickly.  These last 18 months have been one big contradiction; I cannot believe how a year and a half has flown by and dragged on all at the same time. 

Thank you my little bear for helping me work on my patience, and for giving me strength I did not know existed.  Thank you for helping me find my voice and making me a better parent.  Thank you for helping me unlock a hidden desire and passion of writing, that without you would never have come to fruition.  Thank you for brightening my day with your crooked adorable wide mouth smile (when you are in the mood to do one).  Thank you for allowing me to hear your sweet little voice and even your not so sweet and loud cries.  Thank you for being a great teacher and student to your siblings who love you so so very much.  Most importantly, thank you for being YOU.

I hope and pray that these next days, weeks, months, and years of your life will be filled with more joys and accomplishments than seizures, pain, and sadness.  I wish for you many more "ema made" celebrations so we can see your cuteness as you are forced to wear ridiculous customized outfits that bring me so much joy and happiness.  I hope you have an idea of how much you are loved by us all.  


Moreover, thank you for the past 18 months.

Love always, forever and a day, 
Ema

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Wednesday, August 10, 2016

Over thinking

When it comes to little bear there are few items that tend to fall in the "treat this as a typical baby" category.  Since Sonzee entered our lives, the decisions we have had to make have required an intense amount of deliberation and reevaluation to ensure the best answer was reached.  The topics tend to revolve around medications, feeding, pretty much everything that would involve keeping a child alive and giving her the best chance at living healthily.  Now that thankfully she is growing and thriving, we are actually being faced with the more typical baby/toddler dilemmas.  In turn, I recently realized (as in yesterday) that due to this way of thinking that we have been forced into, I still treat each item regardless of its importance in the same manner.

One of the more challenging things for me has been how I treat Sonzee as far as her cognitive capabilities.  Her body size and what she is capable of expressively has always been significantly younger than what her actual age is.  To give you a good idea, if I had to give her physical capabilities a respective age, I would say she is around 3-4 months old.  This is tricky on my brain, as I have to remember that she is actually 18 months old, and if you asked me what her cognitive age is, I would say it is definitely close if not right around 18 months old.  I know she understands what we say, and I know her challenges come from trying to express that to us.  She may not be able to control her body in the manner she wishes, but she knows what she wants and what she does not want and she does very typical 18-month-old things.


My problem is that because of this challenge I tend to overthink everything I do when it comes to her instead of treating her like I would if she were a typical 18 month old.  It is so hard for me to give her a consequence for her actions because what if I am wrong?  What if she doesn't understand when I think she does?  She demonstrates daily what she understands.  Yesterday specifically she was lying on her tummy, I referred to her tushy, and she wiggled it.  If I talk about her feet, she will attempt to grab for them.  I think this one of those gray areas of special needs parenting that I am going to need finagle my way through.  The best part of this...it is no different from being a parent of a typical kiddo.



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Monday, August 8, 2016

Clothing

One of my favorite parts of having 3 girls is having "hand me downs".  There is just something about packing away clothing in storage that my oldest wore and then taking them out for my younger ones.  My memory is definitely failing in many areas these days, but when I open a box of clothing and take an outfit out, I am immediately transported back in time to when the outfit was worn.  I am always so excited about the memories the next daughter will make while she wears the clothing.  One of the harder parts of Sonzee having CDKL5, knowing the memories that will be made in these outfits will be completely different.

Last night I did the clothing switch for Sonzee.  It was time to finally get all of the 12 month and smaller clothing out of the way to make room for the 18-24 month outfits.  I sorted all of the clothing into piles and began the task of filling up bins and bags.  Sonzee has a younger cousin now, and so it gives me a reason to organize, as I am so excited to continue to pass on the ridiculous amounts of girl clothing I have in the attic.  In the past these clothing swaps haven't been all that emotional, but this one was especially challenging.

As I opened the box of 18-24 month clothing and took our each item, the flashbacks of my older two girls flooded my mind.  I was smiling at my memories when that dreaded sting and waterworks production snuck up on me without warning.  Each item I took out took me to a memory of the girls walking, running, laughing, being super cute 18 month old sassy.  I can remember a picture of my oldest wearing a romper sporting her first set of pigtails holding her sippy cup with her right leg bent and toe pointed with such divaness.  I remember that day like it was yesterday.  I took out the jeans and shirt that my 2nd daughter wore the first day she decided to walk consistently (which by the way was two years ago last Friday).  Sonzee won't be doing that in any of this clothing.

I am trying to stay positive and tell myself that maybe with these outfits she will laugh for the 2nd time and or smile consistently? Maybe she will get to sport her "I can sit" sticker in one of these dresses?  Maybe she will bear weight while wearing a cute pair of gently worn shoes that one or both of her sisters didn't wear for more than 5 minutes because they had so many shoes to choose from?  Maybe she will bear weight in her arms and knees and learn to crawl?!  I guess we have time to see what new memories will be made in these dresses, skirts, and shirts.

However, these are the moments that make this journey especially challenging.  It's times like this that I try and take a positive outlook, but the sadness and anger poke their way in.  Why couldn't we just be like the majority, with 3 silly girls and 1 crazy boy all healthy and happy?!  Why aren't I chasing my soon to be 18 month old around and getting frustrated that she is skipping her naps?! Why can't I lay her down and give her tummy tickles and have her belly laugh so loud that it makes everyone else start to laugh as well?!  I hate that one of my most favorite parts of having 3 girls has now also become one of the saddest.  With each outfit I put into a drawer my vision becomes cloudy and my feelings are split between hope and reality. But with all things CDKL5, I guess this is just par for the course.

Thursday, August 4, 2016

Summer

As I packed up the house we rented and thought about the time we have spent in New York, I feel the tears swell in my eyes.  This summer was more than just a vacation, it was a representation of starting fresh after everything we had been through with Sonzee over the past 17 months.  It was a chance for our family to become whole again and it was a chance for us all to grow closer as a family as well as ourselves individually.  I think I can speak for us all that this was the best summer since Sam and I have been married.

We spent the months leading up to this trip uncertain if it would ever become a reality.  Similar to how we face much of our life with Sonzee, where nothing is ever 100% clear or certain.  In a sense it is just life in general, special needs family or not.  When we finally purchased our plane tickets it felt similar to how it does after making a medical decision for Sonzee, still unsure if things would go the way we anticipated, but a weight was lifted from our shoulders because it was no longer in our hands.  

We spent 5 weeks tucked away from busy streets and jam packed schedules. Topped off with 4 days of fun at Hershey Park.  We spent 4 weeks away from any medical facility.  We spent 4 weeks relaxed and where we could actually take deep breaths.  It was a chance for me, specifically, to let go a little.  Sonzee has been off of antibiotics a record time for her entire life.  She made it an entire month without showing any signs of being sick.  While her seizures came back soon into our time away, she developed physically in so many ways.  

I wish we didn't have to leave.  I wish I could have frozen time while we were here.  Unfortunately all good things must come to an end.  That is also how it always seems to go for the good phases of our journey with CDKL5.   Ironically the symbolic nature of our vacation and what it meant in terms of starting fresh has come full circle. As we pack our things I am already scheduling an unplanned EEG for Sonzee when we get home so we can know what exactly is occurring in her pretty little brain.  Again the fear and worry are invading my mind in all areas, the mental vacation coming to a close as well.  Our vacation is over in so many ways.  The familiar lump in my throat has returned and I am trying to push the panic away.

As her epileptologist told me, there is nothing we can do now anyway with her being sick and worrying doesn't help.  While our summer in the Catskills and our journey up north is officially coming to an end, the images I see when I close my mind will be a constant reminder of the physical peace and tranquility that I felt here.  If I have learned nothing else over the last 17 months, it is that the coaster must go up and it must come down, but eventually it goes straight before either.  No matter how many ups and downs we face over the next 10 months I have already started my countdown for our return to the place where the track goes straight and we can start anew.

And just recently someone wise told me the best quote..."you have to leave in order to come back again"...words so true and so applicable to every situation.

Tuesday, August 2, 2016

Some things do get easier

When your child receives a diagnosis such as one as involved as CDKL5 it is easy to get swept away in fears, doubts, and worry towards the future.  You immediately want to take the disorder by the horns and defeat it...there might even be a part of you that naively thinks you can.  You immediately go into "fix-it" mode.  Wrapping your head around the fact that fixing things is simply impossible is one of those concepts that is more challenging to "accept".  I can say for me at this point when I look toward the future I don't ever see myself being content with  not being able to do whatever I can to fix the effects of an incomplete CDKL5 gene, but I am learning that not everything needs to be "fixed".  

When Sonzee was first diagnosed everything to me about her future seemed to be equally depressing.  I would look at the older kids who also had the diagnosis and wonder if Sonzee would present with the same physical delays.  It was honestly really challenging to look at my 2-month-old baby and picture that her body would grow bigger, but her capabilities would remain the same as they were.  

As her journey continues to unfold I am less and less phased by her physical limitations but watching her having seizures....the seizures are for me by far the worst effect.  As I look toward the future, imagining her in an older form seizing uncontrollably makes my stomach to flips and flops.  I have no other way to describe the feeling other than just plain helplessness and sadness.  I can see how much 15 months of a diagnosis has changed my perspective and feelings and to be honest, it isn't all bad.

A year ago Sam and I took Sonzee to the CDKL5 clinic in Denver, Colorado.  We met other families and they all had much older children.  They were beautiful girls, quiet, content, and in wheelchairs.  There was one boy who was walking around and Sam was eager to learn more about him.  To be honest, we didn't find ourselves wanting to be around the other families, it was really difficult to take it all in.  It sounds so awful, but it was really challenging.  I honestly didn't even realize the psychological toll that it would take on us when I originally planned the visit.  Behind the closed doors during our visit both Sam and I were optimistic as the doctors told us to keep doing what we were doing with Sonzee because she was doing things that "other children with a CDKL5 diagnosis weren't doing".  We wondered if it was simply because Sonzee was the youngest diagnosed child and they didn't have children to compare to her at that age or if in fact, we had a rare gem in the world of CDKL5.  We left feeling a false sense of hope and with a false sense of confidence.  It wouldn't take us long to realize that Sonzee was just like every other child, and she wasn't going to be known in the CDKL5 world because of her extra special exemplary skills.

While it continues to be an inner struggle at times seeing pictures of children who also have a CDKL5 mutation complete milestones Sonzee isn't ready for, a year later I can say that things have actually gotten easier.  If I asked myself a year ago if I thought my mindset would be any different in regards to acceptance I would have told you "no, it won't get easier", but that isn't entirely true.  

On Sunday we found ourselves fortunate to meet with another little girl with a CDKL5 mutation.  Talk about becoming instant family friends (at least on our end).  As we spent time with her parents it was similar to seeing a childhood friend who you haven't seen in years, but instantly pick back up from where things were left off.  The hours flew by as we talked and let all of our children bond.  How special it was that our older children had other children who also have a sibling that has seizures, delays, and are different...but they all have a bond because they "get it".  I don't even know if they realize at their young ages how unique and special their relationship will be as they grow up.  It isn't even a doubt in my mind that they will remain in contact in some way.

Besides the amazing tips and information we took away from our visit, what stands out the most to me is how much I have actually begun to "accept" CDKL5.  **I don't know if full acceptance will ever occur, but this is a start.  The girls are almost exactly a year apart.  Her skills slightly more advanced than Sonzee but on the whole, they were very similar.  As I looked at Sonzee's CDKL5 sister, I could envision Sonzee in another year, it was at that moment that I realized I wasn't phased by what the future looked like.  This time, instead of being fearful about what Sonzee might not be doing I saw the possibilities of what she might be.  Here in front of us was a beautiful 2.5-year-old with a love for belly dancing scarves, who is smiley as can be, and communicates when she is upset and happy.  A happy little girl who is content with just hanging out and who enjoys being on her playmat.  I saw a glimpse into our potential near future and I could easily see Sonzee in her as if I was a pregnant woman looking at a newborn baby and imagining she was mine.  The same excitement and anticipation came over me as it would wondering what my other children will do when they turn a year older.  It was at this moment that I realized that while this journey as a whole is not going to be a walk in the park, there are definitely areas that will get easier.  There is a reason our motto is HOPE-LOVE-CURE, and I don't think I truly understand the meaning behind these words until yesterday, and I owe that to our new extended family in Blue Bell, Pennsylvania.

Sonzee's Slideshow